Why Pulmonary Rehabilitation Matters

[nickhoor]

Hello from Greece…..Hellas better!

I was diagnosed in 2015 started esbriet on start of 2016

all that matters with PR is…..good/deep breathing and keep open

your chest with opening wide your hands.the perfect move for my O2

go 97-8% for moments…then back to 90%-by my oximeter-

But keep in your mind that not all ipf are the same

I’m 43 yo and genetic ipf….

I’m not sitting all day at home,but for my heart going out not far…

I have the oximeter that helps

[charlene-marshall]

Hi Nick,

Thanks so much for joining the PF forums and for getting in touch with us regarding this topic.

I am very envious of your beautiful country, and sure hope I can get to Greece someday to visit… welcome!

Sorry to hear of your PF diagnosis in 2015, do you find that starting Esbriet in 2016 has helped you? I really enjoy attending pulmonary rehabilitation (PR) and find that it helps me breathe better overall. I do agree with you that the proper positioning while exercising can optimize oxygenation and help patients feel a bit better during PR. I monitor my O2 the whole time as well, so I am glad to hear you do this also. Due to your PF, are you also living with pulmonary hypertension? Just thought maybe, given you mentioned your heart issues keep you from going too far…

I am 30 and living with IPF, we aren’t sure what the cause is for me yet. I look forward to getting to know you a bit more. Thanks for getting in touch!

Warm regards,
Charlene.

[nickhoor]

Hi Charlene,

Its good to talk with you and others like me…..fighting with ipf

maybe its like a ‘gift’ to us…..we can see clear life….and living it better!

Yes about pulmonary hypertension….but I think you know….human organism is

very strong….even if your heart goes to 125/min you will sit 5-10 minutes and ok maybe…

thats for the O2 too,after walking to long it goes 75% you sit 5-10 min breathing as deep

as you can and….oops 92% again!I say this for me,not for everyone ofcourse….the very bad

think is when the O2 stay down and need homes O2 or hospital from cold maybe….

I must say that the good weather of Greece helps a lot maybe….Sorry for the

lot of maybes but I’m not a doctor

Warm regards,

Nick

 

[charlene-marshall]

Hi Nick,

Thanks so much for your reply! I couldn’t agree more, it is always so nice to connect with others who truly understand what it is like to live with IPF. Although, I wish none of us had to experience this awful disease, but since we are, being able to connect with others who really ‘get it’ is so helpful and therapeutic for me. It is one of the reasons that I enjoy this forum so much, and am so appreciative of everyone on here!

I also agree with you about the ‘gifts’ from this disease. While oftentimes this is hard to see, because there is so much difficulty that comes from living with IPF, sometimes there are gifts of this disease as well. I actually wrote a column about this, check it out if you’d like. The link can be found here: https://pulmonaryfibrosisnews.com/2017/08/03/ipf-productivity-the-gift-of-learning-to-prioritize/

So sorry to hear that you’re also living with pulmonary hypertension Nick. I know this often goes hand-in-hand with IPF due to how hard our lungs are working. My doctors are watching for this to develop in my heart as well. I hope it doesn’t cause you too many troubles. Do you currently use home oxygen?

I can imagine your beautiful weather in Greece helps with your lungs. I find being by the ocean / coast helps with my breathing significantly! Maybe I just need to take a vacation to Greece 😉 LOL!

Hope you’re enjoying your weekend and thank you for writing to me. Take good care Nick!

Warm regards,
Charlene.

[jay-turbes-s]

I think it’s strange and sad the PR isn’t a “given” for IPF.  We here in CO had no idea that it was an integral part of IPF treatment, and her provider Kaiser/Permanente never advised her or offered it until two years after her diagnosis and a new and more competent pulmonologist (“What?? You weren’t told about pulmonary rehab?? Oh, gee…well, here’s a list of places you can go…”).  None of those were Kaiser facilities, and also not included was the pre-eminent respiratory center, National Jewish. By the time we were made aware, Milady had “progressed” to a stage where simply getting to PR and the value it would add are both now pointless.

Like getting Esbriet or Ofev prescribed, getting help from Kaiser/CO was a struggle and nothing was a given.  Irrespective of the health care provider, if an IPF patient doesn’t have someone on the outside to run interference for them, they’re screwed.  A healthcare provider/pulmonologist who practices empathy and advocacy is also too much to ask for. Now she is being told by Kaiser to appear for something called PFT when she barely can move from room to room. If she doesn’t show up, they’ll pull her Esbriet medication — the only thing they do for her in once-a-year visits with a pulmonologist.

My own COPD isn’t helping, and I’m running low on ideas. With IPF, one needs a friend who’ll scream and shout. Don’t expect it from your so-called “healthcare team”.

 

[charlene-marshall]

Hi Jay,

Thanks so much for getting in touch and contributing your thoughts to this thread!

I agree, PR should be included in any type of treatment plan or management of IPF and is certainly frustrating for patients when it isn’t. Sometimes it really boggles my mind that some pulmonary doctors are so equipped with information, while others don’t seem to be and then if patients aren’t aware, we can be left in the “dark” so-to-speak. I am so sorry the latter seems to be your experience because your trusted team of physicians didn’t provide you with this information. How is your wife doing now?

I know it is important for patients to be advocates for their own health, but sometimes I am just too tired for that and I want to trust in the professionals to be the ones with the information. This is coming from a place of extreme fatigue in me today, so apologies if I seem a bit “whiney” …

Is the PFT, a pulmonary function test? Also not easy at all when it sounds like her struggle to breathe is prominent. Has she been on any anti-fibrotic medication up to this point? Sorry for all the questions!

Take care,
Charlene.

[delores-overby]

I start Rehabilitation next week. My doctor gave me a RX for six months Rehabilitation.

[charlene-marshall]

Hi Delores,

Thanks so much for joining the PF forums and getting in touch with us regarding pulmonary rehabilitation (PR). I am glad your doctor prescribed this for you, as I found PR really helped me and have actually done a couple rounds of it due to the improvement I feel not only in my breathing, but just my overall health as well. Are you doing it at your local treatment center? Do you know any patients who’ve done that specific program? How are you feeling about doing it?

Sorry for all the questions, I just know everyone can feel different about it 🙂
Thanks for getting in touch and I look forward to getting to know you a bit more over the forums!

Kind regards,
Charlene